"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
~Jeremiah 29:11~

Saturday, April 28, 2012

I MET FIRST LADY MICHELLE OBAMA!!!

Hi!!
Sorry for leaving everyone waiting with anticipation to hear all about my
meeting First Lady Michelle Obama!!! It was so incredible and I have so much to
share!

We got home pretty late last night and I still had
to pack for my trip to Monterrey today, which we had
already booked weeks ago before all of the excitement!

We landed in Mexico, safely, and I now
finally have a chance to sit down and update everyone!

...So, Where do I even begin?

It has been such a whirldwind of a week!

Thursday night my story aired on TV on both NBC
and FOX... Both reports were fantastic! Fox4's report by Patrick Nolan had such
a huge interest and high demand that it was already re-aired twice since then!!
It is the most viewed, shared, emailed, etc, story on their site right now,
which is really cool amd so great for awareness!!!

Friday morning I woke up, with the gorgeous Florida sun shining through
my window, like any other day. Suddenly, it hit me... I am going to be meeting
the First Lady of the United States... Tonight!
Ahhhhh!!!!!! I could hardly contain my excitement as I woke up the entire house
to remind everyone today was the big day...as if they could forget! ;)

It seemed so surreal!!! I sometimes still have
serious doubts as to whether all of these things are actually happening to me
in real life... Or if I am still asleep in the coma, dreaming about it!

My mom left early to go get her hair and makeup
done and my sisters did mine and helped me get all dressed up, which was a lot
of fun!! I haven't 'dressed up' in over 6 years!

Here is mom and I all dressed to go and meet the
First Lady!!

...We cleaned up well, I think :)

On Monday when I found out that I was going to be
an honorary guest to meet Michelle Obama, I began putting together a packet of
information to hand to her.

Here I am, all ready to go, awareness information
in hand!

At 4pm we arrived to
downtown Naples to the very upscale
hotel called "The Inn on Fifth" where the dinner reception for Mrs.
Obama was being held.

When we walked in there were tons of secret
service and police men still doing their 'sweep' of the hotel..it was so
surreal to see in action!

We were told to wait down in the lobby until the
building was cleared for entry.

While waiting, I heard someone calling my name...
It was Michael and Mabel, the two coordinators of the reception who invited me!
It was so nice to meet them and put faces to their names!

Mabel is from Monterrey and was born in Hospital San Jose! It's such a small world!

Upon entering our hands were stamped and we were
given GREEN wristbands...anyone with a green band was going to get to meet Mrs.
Obama and take a photo with her!

Jason escorted us upstairs and we enjoyed a
cocktail reception while we waited anxiously for Michelle's motorcade to
arrive. Most of the people there had seen my story on TV the night before and
everyone was coming up to me, saying, "you're the coma girl" and
wanting pictures and asking me questions... I felt like a celebrity! :)

Finally First Lady Michelle arrived and we were escorted
downstairs to a private room!

I waited outside excitedly, wondering what I
should even say to her!

The door opened.... And there she was, the first
lady of the United States, in a beautiful red
dress, smiling at me!

When she saw me being rolled in, she said,
"Hi Jessica!" and extended her arms to me to give me a big hug!!

I told that it was my honor to be her guest and be able to meet her... She replied, "No, the honor is all mine to have you here... and I don't just mean "here" at this event tonight ... I mean here, as in "alive"."

She asked me to tell her my story and spent the
next 5 minutes just listening to me tell her everything I have gone through in
the past 6 years--- the tick bite, the suffering, the hundreds of doctors, and
the incredible pain of RSD, that made me feel like I was being burned
from the inside out.

I told her how I was paralyzed, bedridden, fed
thru a feeding tube, couldn't tolerate being touched, how lights and sounds
caused me to have seizures and how I was told I was going to die.

I showed her this pictures of the skin lesions on
my arm, and then the picture of me in the ketamine coma.

She looked at me, in shock, and said, "oh my
gosh... You poor baby...You look so good, so pretty..... I can't believe that
was you! ...I think I need to hug you again, just because I CAN without hurting
you!"

I told her all about the ketamine coma treatment
that saved my life... In Mexico... And how it
is not currently available in the United States.... Even though
ketamine has been approved by the FDA for over 30 years!

I told her how my family had to be separated for
2.5 years while I struggled for survive with my mom sleeping on a couch in my
hospital room for 14 months straight. I told her how this is not just an
isolated rare case... That there are many people in desperate need of this
treatment, here in our country, suffering greatly.

She looked at my mom with tears in her eyes and
told her she was an incredible mother, and that she would do the same for
either of her two girls.

She turned back to me and said, "So, after
seeing hundreds of doctors, you had to go to Mexico and go into a coma to
get well?.... Do you have any further information about your treatment and
illness that I can read tonight on my plane ride back to DC?"

I said 'yes!' and handed her my packet of
information :)

I also handed her another packet of info for her
husband... The President! Who better to get information into the presidents
hands than his wife?!

My mom and I gave Michelle a hand-painted cross
from Monterrey for her to put in the White House and also two little hand-made
mexican dolls for Malia and Sasha.

We hugged again and she told me that I was
"glowing with life" and that I was the poster child for why our
country so desperately needs healthcare reform.

She then motioned for another woman who was
standing in the room to come over. Mrs. Obama introduced the woman as her chief
of staff and executive director of the White House (!!!) and asked me to share
my story with her! I did, and she gave me her contact information and said we
would stay in touch.

I gave everyone I met, including Michelle,
one of my "Jessica's Journey" awareness bracelets, so they would remember
me later that night when they went home and took it off :)

There were some professional pictures taken of me
hugging and meeting Mrs. Obama, but I do not have access to them yet. As soon
as I do, I will post them on here!

Afterwards, we went upstairs to the banquet room
to listen to her give a speech about her husbands campaign. I have to say she
is truly a very gifted speaker.

At one point during the speech she said, "No
American should be without a job... Or an education... Or without access to
heathcare..."

She glanced toward me and mom, who were sitting in
the front row, and added...."and no family should have to exhaust all of
their resources to pay for medical care, outside of the country, for their
dying child."

Everyone clapped. WOW. Is all I can really say
about that!

She then spoke of change.... The changes we need
to see in our country and how change does not happen overnight, but rather, in
"small steps"... I smiled as I thought about what Dr. Cantu always
says "small steps=huge advances" :)

I think it goes without saying that yesterday was
a day that will be etched into my memory forever!!!! An amazing experience that
I will always treasure and be so thankful for!

Through all of my years of suffering I never could
have imagined a day when I would be meeting the First Lady, and sharing my
story with her!!!! God is so awesome!!

There were signs everywhere, little and big,
yesterday showing me that He orchestrated this entire meeting, and I pray and
hope it will lead to more awareness and bigger and better things to come for
all suffering in the near future!

Last night fox re-aired my 'miracle coma' segment and at the end they added this brief clip:

RSD patient meets First Lady:

Tomorrow morning I will be presenting a 30 minute video
I have put together about my journey, set to inspirational music and speaking
about my 'Miracle in Mexico' at the Union Church in Monterrey, whose pastor,
Dave Long, and entire congregation continually prayed for me and were such a
strong physical and emotional support to my mom and I during our time living
here. I can't wait to share my healing, in person, with them all!

I am looking forward to spending the week with my
'mexican family' and sharing all of the excitement and new happy memories in my
life with them! I continue to feel really great, but these periodic trips for
follow up care and evaluation with the doctors who saved my life in Mexico are
vital and key in keeping me this way :)

Michelle Obama even wrote a little note for me on
this picture of me and my heroes, Dr. Cantu and Dr. Luigi! So cool! I
framed it in my bedroom already!

Well, it is time for me to finally rest and
prepare for tomorrow! I am exhausted from the traveling today and events of
yesterday, but wanted to update everyone on this incredible experience!

Ps- I have a funny story about my trip
today...They wouldn't let me through airport security at Miami international
airport because they said I didn't look like the picture on my passport!!!!! We
resolved the issue, but I guess that is a great testimony to the healing that
continues to take place! Haha

Thanks for checking in! I will update again once I
am back stateside :)

17 comments:

Anonymous
said...

Hi Jessica and Sarah,We have been thrilled to read about your truly amazing week and loved getting to follow your reports on the news. On behalf of the Jarvis family, thank you, thank you, thank you for all that you are doing to spread the message and share your story. You never cease to amaze us! Wishing you a wonderful, healing time in Monterrey and a safe journey home. Say hi to the Dr. Cantu dream team for us.Love, Kathy, Mark, Kerri, Erin and Jeff

Sounds like it was an amazing evening to say the least. I am so proud of you and all the lead way you are making for all of us with RSD. Glad you made it safely to Monterrey. Good luck with your presentation tomorrow and treatment this week. All our love to everyone.

Wow! This is incredible! You are a remarkable girl and truly deserve every moment of happiness you are experiencing, so selflessly, using your story to help others not take the same long hard path as you. God bless you, always in our prayers!

Holy Cow! What a way to start my day. This blog just keeps getting more amazing. You and your Mom look radiant! It is truly like reading a grown up version of cinderella. Pardon me for sounding so silly.

You have broken all boundaries. No doubt, you were the most impressive person Mrs. Obama met yesterday and I know she will remember you.

It is so wonderful to see the look of joy on your face. After so much pain and sorrow, seeing you and your Mom happy is a blessing indeed. So many prayers and miracles have been answered.

Thank you for using your voice to speak for all who suffer from RSD/CRPS. In doing so, you speak not only for them, but for all of us caregivers and family. Finally, this disease has broken out of the closet where it had been hidden from the world. You are so courageous and so poised. God has truly spoken through you. We cannot wait to see the next door you open.

Hola Senorita Stevens, what a fantastic series of events with God's hands on the steering wheel all the time!

Blessings to you and your Momma and how funny and delightful that the security brought that out... it is a fabulous testimonial to what this treatment CANDU, via Dr. Cantu, and God!Rest my sweet friends, love Nancy and Joe

Jessica, amazing! Thanks for setting politics aside and putting patient care to the forefront. I pray this administration listens and does the right thing. You put a real face and a true story to the Healthcare reform issue.

You are a beautiful, strong, determined role model! We are thankful you are here with us, too! You and your mom - what a power team!! Congratulations.

Dearest Jessica and Gina, What an amazing experience!!! You both look so beautiful and happy and I can't think of two people who deserve it more!!! I bet Michelle Obama learned a lot from you, Jessica. Through the harrowing medical details of your story are woven threads of faith, hope, patience, gratitude, strength, determination, persistence, and love, all of which played such a large role in getting you to where you are today and all of which come shining through in your smile!!! I am so happy for you!! Say hi to your amazing family for me!!! Love always, Angel xoxoxo

My son Joe Gutholm has RDS and has gone thru 36 Dr's and then i found Dr. Kirkpatrick in Tampa Fl. Yes it NOT legal in US to do the coma with Ketamine but he does what he can with daily doses and did wonders for my son. The pain in wrist, arm and shoulder are gone and still needs treatment for both legs, ankles, bottom of feet. This disease is 24/7 pain and burning sensations. There was a time when i could not even hug him. I had to use MY 401 retirement to pay for this, we need help in USA and Insurance to cover this. GOOD LUCK JESSICA AND ALL THE DR'S HELPING WITH THIS. THANK YOU - DINAH MAGNO A MOTHER WHO ALSO WANTS A GOOD LIFE FOR HER SON.

We all have a MISSION! Thank you for taking yours so seriously! I'm sure is would be simpler to just be well and heal. You have chosen to spread the word and help to find healing for others as well. You are a gift Jessica! We all love you and your family!! Safe Journeys and thank you God!!

To: My AMAZING niece JESSICA and her TRULY AMAZING MOM, my sister Sarah....... I cannot begin to imagine the experience you both had with the first Lady Michelle Obama. Her kind words and inspiration are heartfelt from our entire family..There is no one more deserving that you...Jessica. Your strength and courage will make a difference for many people suffering with this illness. I am so proud of your accomplishments and know that you will not rest until you affect a change. We love you both and are awaiting your return from Monterrey, Mexico...

Please know that I am thinking of you and even though I no longer run my RSD Site you are in my thoughts.My Grandaughter is now 20yrs and has had RSD since she was 9yrs old. Am glad to say that she has the will to lead a nearly normal life.Love from the UKTonyhttp://health.groups.yahoo.com/group/RSD-WorldNews/

Jessica and Sarah, have been trying to reach you by e mail but having trouble getting through?? You have truly outdone yourself this time and look so beautiful doing so, a far cry from the days in St. Jose Tec. What a wonderful gift to yourself and the RSD community to get the word out about this hideous disease.

My sister has been ill for the past 5 years. As you lyme disease and other sensitivities such as seasonal allergies, multiple chemical, electro-magnetic, chronic pain and light/sound sensitivities. Did the coma ketamine help you with all your sensitivities or did it just help for the pain?

Do the allergies and sensitivities disapear as well????? My sister has been living in pitch darknes and alone because she is so sensitive. I had to stop working to care for her. I am exhausted and I am runng out of energy. Taking care of her and my children with no help from the community or government has put a stain on our finances. I hope this will be a possible cure for her because we are running out of time.

Glad to see you are doing well. I hope this can work for her. The problem is getting her to wher there is treatment. We live in Quebec Canada and we have no support. Is there any way possible to connect us with doctors that can help.

My name is Tim and I too have been battling RSD/CRPS for nearly 2 years. The negligence of a driver left me permanently disabled and battling the most intense indescribable pain one could imagine. Thankfully, my numerous doctors in AZ were able to diagnose me while in the very early stages of the disease. I began various treatments immediately – which in turn began my long painful battle with RSD/CRPS. My family too was forced to take on the financial burden of all my medical expenses as the insurance company was refusing to help. My parents took out loans and pulled money out of their 401K to get me these treatments I so desperately needed. I was fortunate to only have to undergo 2 rounds of Ketamine infusion treatments in Florida and did not have to go through the coma treatments as you did. The unconditional love and support from my fiancée and family was what made it possible for me to be where I am today.I first heard about your story from Dr. Kirkpatrick when I received an email from his office with your news story. I was amazed and so thankful that I was not alone in my desire and fight to help get these treatments approved in the US. I learned about your travels to Washington DC and I had expressed my strong desire to Dr. Kirkpatrick that I would love to help you in any way that I could. I definitely want to help join in your fight to get Ketamine treatments approved here in the US. Everyone who suffers from this horrible and crippling disease should be given a chance at a pain free life. I would truly love the opportunity to talk and meet with you and join in the fight. I too have had a tremendous battle with RSD/CRPS and was willing to do whatever it took to get my life back. The hand of God truly touched Dr. Kirkpatrick and has given him an unwavering desire to help those who suffer from this horrible disease. My future has been rewritten by his hands and I have been given a chance at life again. My dreams are now becoming a reality and it is only been possible because of Dr. Kirkpatrick and the Ketamine treatments.I believe God has given us the strength and a voice to help all those in need. We have been through hell and back and lived to tell the story. We have both been blessed with a strength and determination that no one can possible comprehend. We must stand up together and fight for those suffering from this disease that cannot fight or speak for themselves. Everyone suffering from this horrible disease should be able to get the help they are rightfully entitled to as human beings. You are in my thoughts and prayers. I am eagerly waiting to hear from you and I truly hope we can meet soon.T. Waldrepquadracing2791@cox.net

As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!

Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.

Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.

Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

McGill Pain Scale

RSD is the most painful disease known to medicine

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

Jessica during Ketamine coma procedure in Mexico

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Ketamine

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.